Parents in funding race for surgery
Baby Mila survived the death of her identical twin in the womb. Now she needs a rare and costly operation to have a normal life.
Wainuiomata couple Melanie and Nathan Gardner faced an awful decision when Mila's twin, Alyssia, ran into complications in the womb.
They could have both the babies extremely prematurely, putting their health at risk, or carry on with the pregnancy, risking the death of Alyssia and possible brain damage to Mila.
On advice from doctors, they carried on. But 29 weeks into the pregnancy, Melanie woke up and felt her stomach "deflate". The couple went for a scan at Hutt Hospital, where their worst fears were confirmed.
"They looked for Alyssia's heartbeat and where it usually was there was no movement," Melanie said.
Nathan said knowing they could have had the girls earlier made the loss particularly hard.
"That was what was gut-wrenching, but they just kept saying everything was all right."
About three weeks later, Melanie gave birth to Mila prematurely but early signs were that she had survived unscathed, as a happy and normal baby.
"We just lived our life, obviously still grieving . . . and with all the usual stuff that parents go through, such as sleep deprivation."
Mila was about four months old when she started crying intensely, sometimes for up to nine hours. Melanie said she would often go stiff while screaming and, when she brought this up with Mila's paediatrician, she told them her daughter may have cerebral palsy.
Last month, brain scans finally confirmed that Mila, now eight months old, had suffered brain damage when her sister died in the womb, resulting in cerebral palsy.
As she grows, all four of her limbs and her tongue are stiffening. Without help she will never speak, walk or write.
"It's pretty much like she is planking - she can't sit unassisted, she can't even suck her thumb."
Melanie and Nathan are now placing their hopes on a rare operation called selective dorsal rhizotomy, which involves cutting nerve fibres in the spine that the brain uses to stiffen the limbs.
The surgery is not funded in New Zealand, and the family are trying to raise $100,000 through a Givealittle page to send Mila to a specialist St Louis surgical clinic in the United States. For it to be most effective, she needs the operation before she turns 2.
"At the very least it will mean that she will not be living in an extremely painful state for the rest of her life," Melanie said. "In the very best scenario, Mila will be running and there is a high chance she will be able to walk."
For now, her parents are doing everything they can to delay damage to her muscles, regularly massaging her hands and feet, doing strengthening exercises and keeping home as calm as possible to prevent Mila getting excited, which often causes her limbs to stiffen.
In 2013, Kali Johnstone, an Auckland toddler with cerebral palsy, became the first New Zealander to have selective dorsal rhizotomy, at the same clinic the Gardners are hoping to use. Two years later, she is riding a scooter.
Cerebral Palsy Society general manager Harvey Brunt said it was not a new operation but had become increasingly popular. It had been proven to work for some forms of cerebral palsy and was particularly effective for young children.
"It is not a cure-all, but it can make a significant difference. It can be the difference between not walking and walking unaided."
* A fundraising page has been started at http://givealittle.co.nz/cause/pleasehelpmila
- The Dominion Post